KareBear

Welcome to the forum 1kate1!! Sorry to hear you are having these problems and were diagnosed with dysautonomia too. I tried many beta blockers over the years but never tried Atenolol though I do know others here take it so maybe they will give some input. I finally found propranolol that works great for me. It took a little adjusting to it at first but it controls my heart rates wonderfully and my bp no longer drops low like it used to. So, that's the med that helps me most. If the med is bothering you, you may want to let your doc know so he/she can decide if you may need a change especially since it shouldn't increase your heart rates. Is your bp dropping lower on the med or better? If the med is dropping your bp it can make your heart rate rise to try and compensate. Starting new meds is always hard.

It may have been from sitting up too long like Lyla said, I was trying to watch a movie with my family. I did not measure my BP at the time but should have and thought about that later. I too have noticed even if my vitals seem normal I still get many other symptoms so controlling those is only a small part of our issues. Thank you all! It is better today so far

I've noticed this evening that I feel like I am having the typical tachycardia symptoms while at rest, jittery, unable to relax, the feeling like I have to constantly move my arms/legs, fast heart rate feeling in chest, headache, shortness of breath, etc. The problem is my always accurate heart rate monitor shows rates between 85-95 bpm which normally dont give me these symptoms. I normally get them when I get rates 120 and over.

Does anyone else ever feel like they have tachycardia episodes when they actually dont? If so, do you know why?

The docs never mentioned a possible cause of mine. They didn't seem concerned with that for some reason. It does run in my family though not as severe as my case. My other family members are functional.

Hmm, I cant take tylenol because of all the pain meds I am already on high doses of and the affect on my liver but do notice that 600mg of Motrin helps my orthostatic issues which is also listed in the "what helps" section of this website. (Though not this particular strength). I usually take it only when I NEED to get up and cant, and even then only once a day.

I wish I could play video games but it stresses me out way too much lol. The one time I tried to play Call of Duty on xbox live, my friends were trying to teach me how to play and things were getting hairy for our team so they stuck me in a corner and said "wait right here a minute and shoot anyone who goes by". So I waited. A teammate (not a friend) stood right in front of me and shot me!! I was a bit confused. Apparently it is highly frowned upon to hide in a corner. Well it made me mad and I never played again lol.

Hope you all had a great day with family HAPPY TURKEY DAY!!!!!!!

Faintinggoat, it took me over a month to adjust to propranolol but my doc encouraged me to stick with it and not skip a single dose despite how horrible it made me feel and I have to say it is the one med that has helped me the most! I take 40mg 3xday. The first 4-6 weeks are so were tough, it made my symptoms worse and couldn't barely get up, but then suddenly it was like a switch flipped on and and my body adjusted to it and it has helped more than anything else. Helps the heart rates stay consistent, no more chest pains, and my bp doesn't even drop as low as it used to anymore. Of course I still feel horrible and unable to function like a normal person but it made a big difference. I feel like my cardiac symptoms have leveled out and are more normal. I hope it helps you too. It's the first beta blocker that has helped and I tried many.

I've been unable to work for about 5 yrs now and dont see any sign of being able to work again.

When I had both my endoscopy and colonoscopy I not only didn't feel a thing, I slept through them I guess and have no memory of any of it whatsoever.

These are the usual causes of eyelid twitching:

Stress

Tiredness

Eye strain

Caffeine

Alcohol

Dry eyes

Nutritional imbalances

Allergies

If you suspect it's your gallbladder, a trip to you regular doctor and an ultrasound should give you an answer! I hope you feel better soon! Take care!

It can. Do you have pain when you eat? Especially fried or fatty foods?

These are the typical signs of a gallbladder attack:

Moderate to severe pain under the right side of the rib cage

Pain may radiate through to the back or to the right shoulder

Severe upper abdominal pain

Nausea

Queasiness

Vomiting

Gas

Burping or belching

Attacks are often at night

Attacks often occur after overeating

Pain will often but not always follow a meal with fats or grease

Pain may be worse with deep inhalation

It did say that if you need the testing you can appeal. Now whether that does any good or not i dont know.

The science behind why some feel better during pregnancy is because of vascular changes. When you become pregnant your blood volume expands, increases to help support the pregnancy so essentially you have more blood in your body which helps increase your bp.

Wow, that is absolutely horrible! I had sedation with no problem and would have sedation again if I had to but now after seeing your post I know I would chose sedation again no matter what !! That doesn't seem humane! Did you tell them how angry you were? That's ridiculous, no one should go through that. I am so so sorry you went through such torture.

Great info! Thanks for the idea

Mine is manufactured by Mylan Pharmaceuticals

ChristyD, what are they called on the Amazon site? How would we find them? Sounds like it's worth trying!! I know several younger POTSies that would really benefit from it. Thanks for letting us know

Distraction is a good idea. I'm just curious as to how the device would coax you?

I had been on midodrine and a beta blocker before I went to Mayo and still wasn't functional with those meds. I had already been thru many different beta blockers by the time I went. At Mayo they told me not discontinue the meds I was already on.

The only test they STILL will cover is the TTT.

It's no problem, Andy, I completely understand your reasons. It does make sense. I was only curious since I dont believe I have heard of the type of dysautonomia you have and I am a medical geek and love learning. I'm very sorry you are going thru that and being a rare disease makes it tough to find others that can understand I imagine. Thanks for the response and well wishes!

Hi Rima, welcome! One thing you will notice is that we all respond differently to everything including meds and whether we can work or not. For me personally I was in your same position, just starting a job I truly loved but had been pushing myself for so long that I knew inside I wouldn't be able to push much longer. It got to the point I couldn't make it a full week at work without calling in sick at least once.

For me, my doctor was very concerned about the effects pushing myself so hard had on my body. He felt the constant tachycardia that never let up was bad for my heart and causing a cardiomyopathy. So I did have to quit work for both the effects on my health and because I literally could not push myself anymore. I was physically and mentally drained. So I filed for social security disability and I am still on that and wont ever be working again but not working and being home bound has helped my heart and body in general.

There are plenty of people here that can work though with the help of certain meds. And some are able to work more hours than others. It seems to be an individual thing and possibly the cause of your dysautonomia could make a difference as to whether you can work and if your body is affected by pushing yourself.

I think once you et your tests back and see your doctor for possible treatments you may know more about your future. Meanwhile, you have lots of support here! I certainly understand what you're going through! It is a loney place, you are right, but it doesn't have to be as lonely because you have friends here that understand

Sarah, girl you sure have a lot to deal with right now. It must be a bit overwhelming! It sounds like the EP is doing enough background checking to make sure the ablation is right for you and he sounds like a great doc. Will be thinking about you, keep us posted! (((Hugs)))